Sailaja Maganti

Sailaja has lived with the rare, debilitating neuro-immunological skin condition – Prurigo Nodularis (PN) for almost 20 years, enduring a nine-year rollercoaster of a diagnosis journey. She is the founder of the only global patient led charity, Prurigo Nodularis International. Outspoken and determined, Sailaja wants to see the PN patient community receive the care and dedicated treatments that they all need and deserve, on par with patients of mainstream conditions. She wants rare disease patients’ expertise and experience taken seriously and doesn’t want a single rare disease patient to ever endure what she had to. 

A passionate patient advocate, expert and leader, Sailaja is able to leverage and transfer a deep and broad skill-set gained from a lengthy career in the financial services industry to her patient advocacy. She regularly collaborates with the rare disease community, industry and with other partners in key cross-cutting initiatives, this includes among others her roles in Health Technology Assessments, providing her expertise to clinical trials and as a working group member of the Rare Disease Research Network, a partnership between CamRare and the Patient Led Research Hub, funded by the NIHR and sponsored by Cambridge University Hospitals NHS Foundation Trust.